Stories of brain cancer, starting with our own

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brainstem glioma

When David was diagnosed at 16, he was the first person in my immediate family to have a cancer diagnosis. We were shell shocked, to say the least. To be told that your seemingly healthy teen who had a bad headache is going to die… well, nothing prepares you for that. What happens next, though, is something I very much hope we can help parents prepare for.

David went to heaven four years ago, but we have stayed very active in the brain tumor community. It has been a huge part of my life for the last six years. (He was diagnosed in 2010.) I’ve learned a lot since then, some of it while David was in treatment, and some of it after he passed. All of it is information that I would rather forget, but it is important for parents like me to share their journeys so that those who follow after us can have a smoother path.

So here it goes, my top 9 tips for parents who’ve just heard that their child has cancer:

1. GET A SECOND OPINION. (Sorry for the all caps there, but really, this is important.) I don’t care that your doctor has been your family’s doctor for the last 3 decades. I don’t care if you are at one of the top hospitals in the country. Get a second opinion. Doctors are humans, and a lot of what happens in cancer treatments is up to their judgement. You may find that you don’t want to be on the path that they recommend. That isn’t a criticism of them. People are different. Paths are different. You almost always have to talk to more than one institution to know what all of your options are.

2. Do your research. Over and over again, I talk to families who say, “Well, our doctor said it is a ___ and we should do ___.” Then they just do it. We’ve been trained to honor medical professionals and trust their judgement. That’s not a bad thing. But being led around like a blind sheep can lead you into a treatment path that isn’t right for you or your child. When you are given the diagnosis, look it up. Start with major websites that can give you reliable information. A really good place to start is at https://www.cancer.gov/types

From there, look for foundations that specialize in the type of cancer that your child has. Since David had brain cancer, I can tell you that the sites I found useful were:

https://endbraincancer.org/we-can-help/ – to get guidance on what your next step should be. At the time I sought their advice, they were very frank about the type of testing they recommended and what to look for in a doctor, including referring me to a Neuro Oncologist.

3. If at all possible, go to a hospital that has a brain tumor team. ABC2.org only lists hospitals with a dedicated brain tumor team. The world of brain cancer research was virtually stagnant for many years, but in the recent couple of years, discoveries are being made very rapidly.I don’t think it is practical to expect a doctor that deals with many types of cancerto stay on top of every new treatment coming down the pike. Most will wait for the “tried and true” treatments before they change their recommendations. Brain cancer patients frequently don’t have that kind of time. Cutting edge treatments could mean the difference between life (or at least extended life) and death.

4. Ask every question you have. Write them down between appointments and don’t be shy about going through your list. The medical staff is there to help you and your child and the first step of that is making sure you understand what is going on.

5. Don’t be afraid to “fire” your doctor. I know that isn’t going to make me very popular with some folks, but here’s the deal. This is the single most stressful thing you will ever go through. You need to know that the doctor is 100% on your side and will fight for your child. If they ever make you feel like you are wasting their time, or your child doesn’t deserve treatment, move on.

6. Seek help. If you have found a doctor you like, but they are far away, ask for help. There are many foundations that fund travel and related expenses. Hospitals themselves sometimes have funds or auxiliary groups who can assist you. Crowdfunding websites help people raise money all the time for just this reason. You aren’t a slacker if you need help paying for all of this. Treatment is expensive. Time away from work means you have less money than normal. Going to doctor’s appointments means you need extra daycare, pet care, home care. It adds up. You can find a list of resources for brain cancer patients at http://www.dragonmasterfoundation.org. (Full disclosure: I’m President of that foundation.)

7. Make a Plan B. For everything. You may have a reliable vehicle, but what happens if your transmission blows? You have a friend picking up your other kids from school, but what happens when they get the flu? Most likely, you have people offering to help you, but they don’t really know what to help with. Get them involved in your plan B.

8. Make a treatment Plan B. I could have included this above, but this is super important. If your child has an aggressive cancer or one that has a high probability of recurrence, ask your doctor to tell you what the next line of treatment is. Time after time, people are lulled into a sense of security because treatment is going well, and the BAM! The cancer comes back. Everyone wants to believe the treatment will work, and if it fails, you have that same shock that came with diagnosis. Knowing what the next possible treatment is can really help you feel more prepared.

Side note: We were blindsided when David’s cancer spread. He had been on a clinical trial and was doing so well that his results were presented at a conference. We just knew he was going to beat his cancer. When it spread, we were kicked off the clinical trial and had to scramble to figure out what options were available for him.

9. Trust yourself. All of the tips above are for families who are prepared for an aggressive battle. However, not every family chooses that path. We were fortunate because David was a teenager and could tell us his wishes for treatment. Most parents are dealing with younger kids who may or may not understand the repercussions of treatment. We had an amazing neuro oncologist who would always lay out possible treatment options to us and the last choice was always, “or you can do nothing.” David had glioblastoma multiforme, and even now, six years later, there are no easy answers for that type of cancer. Brain cancer is a tricky, nasty beast. If there were one thing that was certain to work, I would recommend it, even if it made the child feel bad for a while. After all, what is six months of feeling bad compared to the potential 77 years of life lost when a child dies from cancer? But with brain cancer, there are no guarantees. Heck, for the aggressive cancers, there is very little hope. The families that push forward with treatment do so because it feels right for them, and frequently, because they want to help other people.

David was pretty adamant about helping others. His tissue was donated to research, and it is now part of an open access database that is empowering research around the globe. (This is also a project funded in part by Dragon Master Foundation. For more info on that, go to Cavatica.org.) It was a heart-breaking journey, but it was not in vain. I know that David would be thrilled to know that researchers are sharing data and working around the clock. We don’t know the answers yet, but I have every confidence that they are on the horizon.

I used to preface my help to people by saying “I’m JUST a mom…” because in the world of cancer research, I don’t want to come across as a doctor or researcher. However, my hard earned “momcology” degree is valuable, and I’m moving forward with a sense of purpose that my message is important and needs to be heard. Do you have tips you’d like to share for newly diagnosed patients? Please share them in the comments!

This week I had the great pleasure of speaking with Dr. Peter Adamson, Group Chair of the Children’s Oncology Group (COG). For those of you unfamiliar with COG, more than 90% of children and adolescents diagnosed with cancer each year in the United States are cared for at Children’s Oncology Group member institutions. Their goal is to cure all children and adolescents with cancer, reduce the short and long-term complications of cancer treatments, and determine the causes and find ways to prevent childhood cancer. That matches our mission pretty well, so I was excited to learn where we might be able to collaborate.

COG is currently focused on collecting biospecimens and clinical data. In layman’s terms, they are collecting cancer specimens (tissue, blood, etc) as well ad information on the child’s diagnosis, treatment and outcome. They have collected a massive amount of data over the past 50 years. They have well over a million biospecimens! More than 350,000 patients have shared data with them. They have biorepositories and databases in different parts of the country and work with over 220 hospitals in the US & Canada.

I am very impressed by what they have accomplished, but ultimately, I believe that the infrastructure we are building can improve the work they are doing. Their focus is collecting the specimens and data. Our focus is taking those specimens and data and making them a perpetual resource backed by robust computational power to allow them to collaborate with other researchers and also analyze and visualize the data in new ways.

To give you some idea of the scale of the data, let’s look at the numbers. There are approximately 14,000 children a year diagnosed with cancer in the US. Collecting a biospecimen would cost somewhere in the range of $1,000. (The NIH currently values that at around $500, but the actual institutional cost is thought to be much higher, thus my $1,000 figure.) So just to collect the biospecimens for those patients, you are looking at $140,000 per year. However, that is just scratching the surface of what needs to be done. Those specimens have to be stored (visualize giant freezers with robots to access the individual samples), categorized, and matched with corresponding clinical records.

Traditionally, most hospitals and foundations have been unwilling and/or unable to invest in the infrastructure that it would take to compile this amount of data. COG demonstrated real vision by collecting this data and they have been able to use it to forward science. Dragon Master Foundation believes that additional computational power, or “big data” analytics, will help them find the cures they seek even faster.

Dr. Adamson said he felt Dragon Master Foundation is taking “a sophisticated look at the challenge.” We know that building this type of computational infrastructure will be expensive, but we also know that it will exponentially decrease the amount of time it takes for researchers to collect and query data. Faster answers to their questions means faster cures for us.

There is no doubt in my mind that we are building a resource that will improve cancer research. It ultimately will help cancer researchers throughout the US, and probably throughout the world. It will make the work they have been doing for years more relevant.

To learn more about Dragon Master Foundation, please visit http://www.dragonmasterfoundation.org. To learn more about the Children’s Oncology Group, please visit projecteverychild.org or childrensoncologygroup.org .

We get a lot of questions about Dragon Master Foundation, and whenever I have the chance to talk to someone about it, the response is amazing. They always end up saying “Wow, that’s such a big deal!” People are so generous with their support once they understand the project. The problem is, a lot of people don’t understand what we are doing and why it is needed. So I thought I’d take a moment to explain a little bit about what makes this project so special.

When David was sick, we were inside hospitals for days at a time watching people do their jobs. Technology is everywhere – from the patient bedside to databases in some unseen corner of the building. However, all of that technology seems to be locked inside each institution, with very little ability to share information from one hospital to the next.

It is like being a horse with blinders on. You can only see a small part what’s really out there. You get a myopic view of the world. Unfortunately, that is the world most cancer doctors and researchers face. They long for more information, but it is largely out of their reach.

You may be thinking, “But what about the internet? Can’t they just send their information back and forth?” The short answer is no. Between HIPAA, different technology formats, and the sheer size of data, even the most collaborative hospitals have trouble sharing all the information researchers want to access. Collaboration would mean that a database would quickly need to warehouse petabytes of of information – a task that has only been tackled by the likes of the NSA or Google in the past.

It is an overwhelming task, to be sure, but for the first time in history, it is possible. It is possible to house genetic information and clinical data in one place so that researchers can really see the “big picture” of a patient’s health and furthermore, they can compare that patient to other patients. They can start to see why a drug works for one patient and not another. They can start to make sense out of things that are seemingly random.

It will be four years this September since we were dropped into this cancer world. I’m not a doctor or a researcher, but I’ve talked to as many as I could over that time, and every one of them has said a database like this would be an asset to them. EVERY ONE OF THEM.

And yet, we continue to spend money on tiny projects that help a single researcher or a single hospital. Please don’t misunderstand. Every researcher needs funding. Every hospital needs more help. But this is a situation of not being able to see the forrest for the trees. We need to build an infrastructure for the research data if we ever hope to move at a pace that is faster than cancer.

The good news is, we have made amazing progress. We have joined forces with the Children’s Brain Tumor Tissue Consortium, Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Chicago’s Lurie Children’s Hospital, and Children’s Hospital of Seattle to take the database they are working on and grow it to a scale that can help pediatric and adult patients. The data is already being collected, which is a great and wonderful thing. However, it means that we are already at a place where we need vast amounts of funding in order to continue to grow.

I wake up every morning more sure that this database will change the way they do medical research. I have hope that people will begin to understand the vision that that this database represents, and that they will focus on helping us build it. You ABSOLUTELY CAN make a HUGE difference in the fight against cancer. Please share the mission of Dragon Master Foundation. Like us on Facebook ( http://www.facebook.com/DragonMasterFoundation ). Follow us on Twitter (@dragonmasterfdn and/or @amandahaddock ). Host a grass-roots fundraising event. Something as simple as dining out at a local restaurant that will donate proceeds can be a huge help with both raising money and raising awareness. Cancer is a beast that is taking lives. You can be a dragon master. Please join us today!

What I had wish I had known before my brain was diagnosed with cancer.

Survivor with a Smile

My senior year of college had just started, and I started getting headaches just about a month in. At first they were seemingly small, like just regular type headaches. Soon I was missing more classes than I could afford, and I was having them every day. They were intense. I tried everything in the books to get rid of them, nothing worked. People kept telling me that I was overly stressed and probably drinking too much caffeine, though I’m not a huge caffeine drinker. I just assumed I had fallen victim of those “dreaded migraines.” I never bothered to go to the doctor.

I graduated, somehow, on time, but they continued to get worse. Over the summer while I was counseling at camp, I noticed my memory was terrible. I was leaving and forgetting things all over the place, which is so out of my character. Especially being a counselor. I was jumbling power points and going completely blank with many things.

I didn’t really start to think something was wrong until a couple months later. The headaches were through the night and day. I couldn’t escape them, and I was losing my ability to function day to day. A year after I started having headaches, I finally went to the doctor to get migraines meds. She listened and said, “I think you need to have an MRI.”

Five hours later she had called my house phone, but I had missed the call due to my grandparent’s 50th wedding anniversary that weekend. I didn’t get the message that I needed to call her until Sunday night. Little did I know, this was the start of a journey I didn’t think I was ready for. She said I had an abnormal amount of tissue on the brain, along with some lesions on the different lobes, but she couldn’t be the one to diagnose it. I wish I would’ve realized how much the Lord was going to protect me in this journey, that first phone call being one of them. My family was able to gather and enjoy each other without having to worry about what the answer on the other end of the phone would be, until after the weekend festivities were over.

I wish I would’ve known about the journey ahead. We made it to a neurologist, and he hardly looked at the scans and sent me on my way with medicine I said made my headaches worse. On to a new neurologist we went. It wasn’t until a month after my original results that I was officially diagnosed. On October 22, 2013 I was diagnosed with a brainstem glioma, and possibly MS on top of that. This diagnosis rocked my world. I wish the doctor would’ve been clearer in my specific type on the phone, and I wish I would’ve stayed away from the internet in the waiting period to see the doctor. My life was changed, more positive ways than negative, but nonetheless, a mountain had formed in front of me I knew I had to climb.

I didn’t know how this journey was going to change me or the patience and endurance it would require. The seemingly endless poking and prodding of needles, the hospital gowns, the early mornings and late nights. It all seemed unbearable, but I would receive letters stating how inspiring my story was and how I changed their outlook on life, all because of my faith through all of it.

I wish I would’ve known how loved I am. That I matter. I have a wonderful family, friends, and a fantastic church family, but yet I didn’t really understand that I was loved and cherished by so many. I don’t think I even really fully understood HOW MUCH GOD LOVES ME. I matter in this world. As word got out that I had been diagnosed with brain cancer, letters came pouring in. Flowers were being sent, I was getting little goodies in the mail, care packages – and messages on Facebook from people I didn’t even know saying how I inspired them and how I helped them in their walk of faith. I was overwhelmed with love and God had shown me how incredibly blessed I really am.

My value doesn’t come from man, but from God, and I wish I would’ve grasped and understood this without having to have cancer. If I’m honest, growing up I had some very dark moments where I questioned if my life was even worth living. Cancer changed that outlook forever, every day is a gift and a blessing, not a burden.

I wish I would’ve known how God was going to use me through this. I do not believe that God gives people cancer, or other terrible diseases. I truly believe this is a cause from the fall of man that goes back to the Garden of Adam & Eve, the world became broken. What I do believe is that God can take something so horrible and use it for His good. From the first phone call there were lots of tears, long nights of anxiety and wondering and questioning if I was going to make it. Am I going to live long enough to get married? Let alone get a boyfriend? Am I going to live long enough to go to grad school? Long nights of wondering what I wanted to leave behind to those I love most.

I decided from the beginning that I was giving this to God. That no matter what happens to me, I want God to get the glory, and I want Him to use this in whatever way He wants, even if that means losing my life. I became a better friend, a better daughter, a more forgiving and loving person, and I wish it would’ve happened without cancer.

God has used my cancer to reach and inspire others. I have had relationships repaired and friendships restored. I never thought in a million years my relationships would be where they are today, and I didn’t know God was going to use my diagnosis and softened heart to repair them. I’ve had friends come to me wanting advice on how to talk to friends with a recent diagnosis, I’ve been able to encourage and show compassion to those who have just started the same journey. I’ve been blessed to be able to shine His light through such a dark and scary illness. God softened and changed my heart and I’ve never had a stronger faith than I do now.

I wish I would’ve known that God does give you more than you can handle. For all of my spiritual life, I believed God didn’t give you more than you can handle. I was even guilty of telling people such things, though I’m not sure I ever believed it, but I thought it was true. After being diagnosed, I realized I was in way over my head. I have to do things that are only in nightmares, and I quickly realized this is too much. I am overwhelmed and I can’t handle this – on my own. The hospital visits, the long days of being in pain, the spinal tap, unable to work at an age where I feel as though I need to be working, all of which is too much. It didn’t come easy, but I learned that in this world we sometimes get more than we can handle, but God will be there to equip us and guide us to get through it. The passage where it says that His yoke is easy and His burden is light is there because God KNOWS that our burdens can be too much to carry, but gently reminds us, He is big enough to handle anything. God has allowed me to carry more than I can handle, but He is always there before me paving the way and holding my hand.

I wish I would’ve known how to live life to the fullest before the diagnosis. I never realized how much I was missing in life until I heard the word cancer. It’s a scary, mean word, and it really makes you step back and look at priorities. I no longer live in the future as much, or go back to the past, but I stay in the moment. Every second counts, every precious breath, every smile, every beautiful sunset, is a blessing. Less worry and more doing. I wish I would’ve been living like this before I was diagnosed, but I wasn’t, and at times I still don’t, but I am learning each day to take it as a gift, a beautiful gift.

I wish I would’ve known how painful this journey really is. I remember vividly my Grandmother’s vicious battle with breast cancer, and mine has not been remotely close to such battle, but it certainly has been far from easy or pain free. I have had horrible headaches for over a year, almost two now. I thought when we figured out what was wrong we could get rid of the headaches, but that was far from the truth.

All of sudden I realized, I really am sick. We tried so many medicines, I can’t even count. Some that made me cry for no reason, some that made my skin crawl, and some that made my head hurt so much worse all I wanted to do was bang it against the wall. My memory was bad enough without medication, but another made my memory absolutely terrible. I have always been someone who can remember all the kids in the classroom’s name after the first day or two, now that is out of my ability. Medicine that made me lose so much weight I literally felt weak. I remember looking in the mirror and telling myself that I hated looking so sick. My appetite was gone, food tasted different. I would try to drive to a place I’ve driven countless times before, and I would get lost. I had to hand my keys over to my friends at times so they could drive for me. Medicine that made me angry and moody. I felt trapped and I knew this wasn’t Kaitlyn, but yet I couldn’t change it. The countless blood work with the many times I almost passed out, the blown veins, the kinked lines, the burning and electrocuting pain of the spinal tap. And nobody ever tells you how exhausting it all is. The bubble in the back of our heads that I could also have MS on top of cancer.

It’s not easy. It’s difficult and trying, but I have hope. I have confidence that God won’t stop working in me and through this. I wish I would’ve known how much strength I had. “You never know how strong you are until being strong is the only choice you have.” Things have been looking up, more answers have been pouring in, and I am finally going to be able to go back to work. I wish I would’ve known how drastically my life was going to change. God is good, and He will continue to orchestrate whatever is best, no matter what the final outcome.